The Art of Dying Well

by Katy Butler

  If you are lucky enough to live in an area with a Kaiser Perma-nente organization, or another one of the excellent nonprofit Medicare Advantage plans listed in the back of this book, I strongly suggest checking it out. Advantage plans have a built-in financial incentive to offer better coordinated care to people with multiple health problems, and a better record in caring for the dying. “On almost every quality metric for end-of-life care, terminally ill patients enrolled in Medicare Advantage plans received better care than those enrolled in fee-for-service Medicare,” bioethicist Ezekiel Emanuel, a health policy consultant to the Obama administration, wrote in JAMA in 2018. Fewer were hospitalized or admitted to an ICU in their last three months, more enrolled in hospice care, and more died at home rather than in a nursing home.

  But the quality of Advantage Plans vary wildly by region. Speech therapist Amy Lustig cautions that many of her clients had access to a better array of covered services when they were in standard Medicare. Check the annual listings of the stellar ones in US News and World Report.

  In an area without a good freestanding HMO or Medicare Advantage plan, ask around for a regional nonprofit health system with a good local reputation, started by community leaders, with a tradition of collaboration among diverse providers (such as doctors, hospitals, nursing homes, and home care agencies). Then find insurance that covers it.

  Another option, if you can afford it, is to join the “concierge practice” of a good primary care doctor. In exchange for a fee (ranging from about $100 a month to many thousands) on top of usual health insurance costs, these doctors devote more time to fewer patients. The phrase may sound snooty, but many concierge doctors are dedicated to delivering time-intensive, high-quality medical care and have patched together a funding model, within a broken system, that permits them to do so. The people I know in concierge practices tend to be much more satisfied with their first-line medical care.

  REVIEWING MEDICATIONS

  Americans have the dubious distinction of being the most medicated people on earth. With a few notable exceptions, all this pill-taking has not produced significant improvements in health. More than two-fifths of Americans over sixty-five are on more than four medications, and many of those drugs increase their risk of falling, developing dementia, or damaging a vital organ. Medication reactions in people over sixty-five account for a quarter of all emergency room visits and half of all hospitalizations for medication errors, some of which prove fatal. The problem is so widespread that it’s earned its own medical label: polypharmacy.

  Because your kidneys and liver now work less efficiently, drugs remain longer in your tissues and create more side effects. A medication that causes grogginess may be no worse than a hangover for a young person with the surplus neural connections that scientists call “cognitive reserve.” The same side effect might cause an older person to fall or to forget about a pot on the stove, prompting pressure from anxious adult children to make a premature and unnecessary move to an assisted living complex.

  * * *

  The root cause of most overmedication is having multiple doctors write prescriptions. The long-term solution is better coordinated medical care, and the interim solution is to simplify your drug regimen. If you are on more than five medications, set up an appointment for a medication review (and no other purpose) with your primary care doctor, a geriatrician, or a pharmacist with specialized knowledge of geriatrics. (You can also consult the website Drugs.com, or the Physician’s Desk Reference, available at most libraries.)

  Put all pill bottles, including supplements, in a paper bag. Ask the practitioner about the purpose of each drug, and whether it could be causing a bothersome symptom, especially dizziness, falling, or confusion. Is it amplifying, canceling out, or interacting with another drug on your list? Does it increase your risk of dementia? Is it the lowest effective dose of the cheapest, safest option? Is it working? If you haven’t noticed a positive effect after six weeks, can you drop it? Was it prescribed to address another drug’s side effect? If so, might you be better off skipping both drugs and just tolerating the original problem?

  My watchword here is discernment. Controlling blood pressure and blood sugar, for instance, is proven to save lives and postpone disability. Effective pain management is equally critical, because people in pain exercise less, feel more miserable, get isolated, and function poorly. But I suggest turning a cold eye on the following drugs because of the risks they pose to balance, brain, or continuing independence:

  Cholesterol-lowering statins have dubious advantages for people over seventy with no history of heart disease. The benefits, in the form of reduced risk of a heart attack and stroke, are minimal for anyone likely to live less than another decade. Side effects can include fatigue, cognitive impairment, diabetes, and muscle pain and damage, all of which increase fall risk. If you are suffering a difficult side effect, geriatrics specialist Eric Widera, MD, of the University of California medical school in San Francisco, suggests that you and your doctor ponder dropping them.

  Drugstore painkillers are useful in moderation, but not harmless. Ibuprofen can raise blood pressure, and repeated overdoses can cause kidney damage severe enough to require dialysis. Many people with chronic pain benefit from low round-the-clock doses of Tylenol (acetaminophen), but overdoses are the nation’s leading cause of liver failure. Aspirin in excess can cause stomach bleeding. Rotate minor painkillers and don’t take more than labels recommend. Explore managing pain with nondrug remedies, such as yoga, massage, meditation, exercise, physical therapy, or mindfulness-based stress reduction (MBSR), offered by many hospitals and health systems.

  Anticholinergics radically increase your risk of developing dementia. They are contained in many over-the-counter and prescription drugs for sleeplessness, allergies, acid reflux, colds, incontinence, irritable bowel, muscle spasms, and anxiety. Staying away from them may be the easiest and most powerful way to protect your brain. As a rule of thumb, beware any drug whose label warns against drowsiness, confusion, or operating heavy machinery.

  Be skeptical of drugs containing the anticholinergics chlorpheniramine (in Actifed), diphenhydramine (in Benadryl), and loratadine (in Claritin). One or the other is frequently present in drugs like Excedrin PM, Advil PM, Aleve PM, Nytol, Simply Sleep, Tylenol PM, Chlor-Trimeton, Codeprex, and Advil Allergy and Congestion Relief. A landmark study in Washington State involving more than three thousand people, found that those over sixty-five who used anticholinergics heavily were 50 percent more likely to develop dementia than those who took very few. Many anticholinergics are taken for minor problems; find nondrug remedies, or wait it out.

  Prednisone and other steroids reduce pain and inflammation by dampening the immune system. They increase the risk of falls and cognitive impairment. Find alternatives unless life is at risk, and even then take the lowest dose for the shortest possible time. Noted side effects include depression, confusion, mood swings, muscle weakening, temporary psychosis, and long-term heart damage.

  Benzodiazepines and sleeping pills increase dizziness, fatigue, and falls. If you are anxious or suffer from sleeplessness, be cautious about Valium, Librium, Xanax, Ativan, and Halcion. Daniel Hoefer, MD, who oversees serious illness management programs for the Sharp Rees-Stealy Health System in San Diego, suggests aggressively exploring nondrug remedies. Once again, start with what requires the most from you and the least from medicine, before escalating step-by-step to drugs with greater potential for harm. Benzodiazepines are addictive and should be used only short term; weaning yourself must be done very slowly, under a doctor’s supervision.

  See if incremental fixes will improve your sleep quality, which naturally declines with age. Many people do better when they skip caffeine after noon; get more exercise in daylight; keep a regular bedtime; replace a lumpy mattress; wear socks to bed; shut down computer and TV screens after dinner; and keep the bedroom cool, quiet, and dark, using earplugs and a sleep mask if necessary. Others improve their sleep with bedtime rit
uals, like drinking chamomile tea; taking a twenty-minute hot bath shortly before bed; making a to-do list for the next day; or listening to a relaxation or self-hypnosis audio. Some people swear by the hormone melatonin, available over-the-counter, but its long-term effects have not been studied.

  In all things, don’t let the cure be worse than the disease. A leaky bladder, for example, is an embarrassing and common old-age inconvenience—but the Ditropan (oxybutynin) often prescribed is an anticholinergic. When people on it seem befuddled, the antidementia drug Aricept is added, often worsening the original incontinence. Another common side effect of Aricept is a slowed heartbeat, which can lead to the unnecessary implantation of a pacemaker. Better to eliminate both drugs and see whether you are any worse off. Once again, start by exploring nondrug remedies: ask your doctor for a referral to a continence training class, learn to do Kegel exercises, use pads and time bathroom breaks, or try taking a postnatal yoga class to strengthen your internal musculature.

  REDUCING SCREENINGS

  A “screening” is a search for a health problem in the absence of symptoms. Some, such as Pap tests, have proven their worth by catching treatable diseases early. But they’ve also led to medical overkill, and geriatrics specialists recommend against many of them because they promote unneeded worry and overtreatment.

  The American Academy of Family Physicians, for instance, recommends against a PSA (prostate cancer) test for men over seventy-five without a family history of fast-moving prostate cancer. A high PSA reading often creates emotional pressure to undergo surgery and radiation, which can leave you with incontinence and impotence without extending or improving your life. Most prostate cancers are so slow-growing that older men die with them rather than of them.

  Colonoscopies save lives by detecting precancerous polyps. The United States Preventative Task Force does not recommend them for people over age seventy-five without a family history of colon cancer. They usually require sedation and large co-pays, and they carry a small risk of perforating the colon—a potentially devastating physical setback to an older person. (They are, however, very well reimbursed.) The polyps can take five to ten years to develop into cancerous lesions. If you’re unlikely to live that long, or are too fragile to withstand surgery in any case, skip the screening. An annual twenty-dollar noninvasive FIT screening (fecal immunochemical test), or the higher-priced Cologuard, will look for hidden traces of blood in your stool, and will do almost as good a job of detecting problems in your lower colon at a fraction of the cost and risk. You collect a sample in the privacy of a bathroom, put it in an antiseptic bottle, and mail or deliver it to a lab. You can find other “not recommended” screenings, vetted by the relevant medical specialty, on the Choosing Wisely site of the American Board of Internal Medicine (ABIM).

  MAKING PEACE WITH LOSS

  Loss is a given in this life stage. Grieving—for people who have died, for a job you once enjoyed, for physical powers that are fading—is not depression. Don’t pathologize sorrow, it’s a healthy and common human emotion. Antidepressants cannot cure it, and many that work well in midlife, such as Prozac, increase the risk of falling.

  After his wife, Clydene, died of pancreatic cancer in 2006 at the age of sixty-nine, Doug von Koss spent months mourning her. Clydene had been a knitter and an award-winning quilter, making all her own clothes on her prized Bernina sewing machine. Every closet and drawer, every square inch of their shared house, was stuffed with boxes filled with materials for her crafts.

  “Evidence of her passions was everywhere,” Doug told me. “A closet bursting with costumes and dresses she had designed and crafted, each with a particular memory for me. The smell of her perfume—Shalimar. Enough fabrics in the basement to supply a quilting society for a year, and enough yarn to make sweaters for two kindergarten classes. There were carefully labeled boxes dedicated to holidays and birthdays, each carrying a memory of friends and family and, of course, Clydene. There was an enormous hole in our home and in my heart.”

  After the memorial service, he created an altar to Clydene on top of the grand piano in their dining room. Atop a piece of brocade fabric, he placed emblems of his dead wife: her lace handkerchief, a pair of her earrings, a pincushion, her knitting needles, embroidery scissors, a tape measure, a favorite teacup and saucer, and a framed photo of her when she was still radiantly healthy. He covered the altar with a piece of lace, so that most of the time he could see only the vague outline of her precious things.

  Each morning, in a private rite marking his transition from husband to widower, he would uncover the altar and have a conversation with Clydene—“sometimes internal, sometimes aloud,” he told me. He wept in seemingly endless sorrow. “Sometimes it was really raw, but grief isn’t pretty. When I felt complete, I covered the altar and got on with the day.”

  Occasionally he came across an object or a photo that carried a new memory and placed it on the altar, so that it wasn’t static. After months of mourning, he reread the marriage vows they’d taken and came to the place that reads “ ’til Death do us part.”

  He had kept his vows and completed them. Death had parted them. He was husband no more. “The sense of loss diminished and a gratitude for what we had took its place,” he said. “This was a welcome surprise.” He took down the altar and left the company of mourners. He emptied the closets, distributing Clydene’s treasures to her friends, her daughter, her daughter-in-law, and her granddaughters. He gave clothes to Goodwill and fabrics to quilters.

  One day he felt the urge to paint what had been their bedroom (and was now only his) a burnt orange, even though he was sure she’d have disapproved. Next he painted the bathroom a sea green—surely too bright for her taste. The dining room and living room followed, painted a beautiful Mexican yellow gold. He bought wall-to-wall carpeting, put down new linoleum in the kitchen, and hung up pictures he knew she wouldn’t have liked. The colors are unusual, harmonious, and beautiful.

  “Her voice was over my shoulder a lot,” he said. “Oh Doug, you’re not going to do that, are you?

  “And of course, I did. And clearly, I love it! Rugs, bedding, towels, curtains, upholstery, and much more were changed to accommodate a widower who needed a sanctuary for the long haul,” he said. “It is quite enough to carry the memories of our lives together in my heart and imagination. I can visit them at my choosing now, instead of living in a constant reminder of what once was and is no more.”

  Ways to Prepare:

  • Simplify your life, manage your energy, and do what really matters to you.

  • Enroll in an HMO or Medicare Advantage plan that provides well-coordinated medical care if there is a good one in your area, or find a geriatrician.

  • Schedule a medication review with a doctor or pharmacist once a year, and whenever a new medication is added.

  • Above all, guard your brain. Stay away from anticholinergics, which increase your risk of dementia. Be equally cautious about drugs that increase fall risk. For a full list of drugs dangerous to older people, consult the updated “Beers List” from the American Geriatrics Society.

  • Question and eliminate unnecessary health screenings by checking the Choosing Wisely website.

  • Improvise rites of passage to make peace with loss.

  —CHAPTER 3—

  Adaptation

  A Moment of Truth • Mapping the Future and Making Plans • Finding Allies in Occupational and Physical Therapy • Disaster-Proofing Daily Life • Making a Move • Practicing Interdependence • Being an Example

  Now a Pinion, Next a Spring

  I learned with great regret the serious illness mentioned in your letter [and hope] you are entirely restored. But our machines have now been running for 70 or 80 years, and we must expect that, worn as they are, here a pivot, there a wheel, now a pinion, next a spring, will be giving way: and however, we may tinker them up for a while, all will at length surcease motion. Our watches, with works of brass and steel, wear out within that perio
d.

  —THOMAS JEFFERSON to JOHN ADAMS, Monticello, July 5, 1814

  You may find this chapter helpful if you recognize yourself in some of these statements.

  • You know you’re not going to “get better.” This is the new normal.

  • You say “I don’t know who I am anymore,” if only to yourself.

  • You’ve given up driving.

  • People you’ve helped in the past are helping you now.

  • You use hearing aids, a cane, a walker, a Seeing Eye dog, or a wheelchair.

  • You need help with some chores of modern life, such as yard work and housework, shopping for groceries, doing your taxes, taking medications on time, cooking dinner, or making phone calls.

  • Your health conditions aren’t annoyances anymore. They’ve changed how you live.

  • You sometimes worry that you’re exhausting your family members.

  • You’re considering moving into assisted living or in with a relative, or getting more help at home.

  • You no longer call the shots around your house, and you know it.

  A MOMENT OF TRUTH

  It was an early evening in late autumn in Marin County, just across the Golden Gate Bridge from San Francisco. Twilight had fallen. Bronni Galin, an eighty-two-year-old practicing psychotherapist, was driving from her office to her home in the leafy suburb of Mill Valley.

  For more than a year, she’d been losing her central vision to age-related macular degeneration. After a couple of fender-benders, she’d promised her two daughters that she’d drive only in daylight. But Daylight Savings Time had just ended, sunset had arrived sooner than she expected, and there she was, driving home at dusk. She was only a couple of miles from the small wooden house in the hills where she’d planned to live until the end of her life.